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December 11, 2014

One of the aims of the #LBBill is to push the State to be more acknowledging, more respectful of the input of families & allies into the lives of disabled people, post 18. The current attitude of the State is pretty piss poor. The most common responses of the State towards families range from being totally ignored, humoured, to being met with suspicion or downright hostility.

This attitude doesnt make any sense to me. Surely all the evidence is that families become even more important post 18. Just supposing that on the person’s 18th birthday, every family announced that they were downing tools. The State would implode.

For people with autism, routine is so crucial and for the most part between the ages of 5 and 18, that routine is provided by the routine of school. When school ends, a whole new routine needs to be built and it is solely down to the family to facilitate and maintain the new routines. Nobody else can do it. And it becomes a lifetime’s job from 18 until the family carer is no longer around.

At 18, you get caught up in the lie that is “transition into adult services”. There are no services. There is no transition. But you become distracted by this imaginary process at a time when your energy needs to be focused elsewhere – helping your 18 year old build a new life. I remember Steven’s old social worker, Whistler’s Mother, giving me a wad of handouts of ” things Steven might like to get involved with”. Most of them had been photocopied so many times they were unreadable. Most related to children’s services. A handful related to events he could do once or twice a year. Out of 60 odd pages, there wasn’t one that could be used to build a new routine.

The reliance on families by the State is huge. I’ve written many times before that for personalisation to work, the expectation on the family’s input is massive. You become an employer. You have to run a payroll. You have to recruit staff. Nobody else will do it. If families didn’t do it, personalisation would collapse.

A family member’s life changes dramatically when your son or daughter hits 18 as well. I was lucky, being self employed, that I could chose the hours I worked. But overnight, I suddenly had to reduce my working hours considerably. There was no support and Steven needs 24 hour support. Even with his “gold standard package”, I still can’t work more than 25 hours per week.

The other problematic area is that a whole lifetime of experience suddenly counts for nothing. Knowledge, memories, built relationships are suddenly seen as threatening rather than the foundation stones they should be. It is deeply confusing for the family because, on the whole, during childhood your input is valued by the State. Upon the arrival of an 18th birthday card, you become a nobody in a nothing system.

This isn’t meant to be a whinge post. I love my role in Steven’s life and know it couldn’t be any other way. But roll on #LBBill and a day when the State recognises the reality of life for the over 18s of the social care world and their families.

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From → Social Care

5 Comments
  1. I have also noticed, that when families split up and family ties are lost along the way, how important it is to the children (even if adult) that they continue to have some contact with people who can remember their babyhood, infancy and childhood.

  2. I too find it strange when our children reach 18 we lose the parent carer role and become family carers as the person cared for is now an adult and is able to make choices in their own right the Carer is usually the mother as the father usually works and siblings eventually grow up move out and have their own families and lead a life of their own. I would like to see families acknowledged as well but even more important is that family carer is acknowledged,something we have been fighting for,for many years as they are the drivers in fighting for an individuals rights and usually give up their careers to do so they are also the best advocates too . More snippets from the national carers strategy but this one is very pertinent ..’Carers should be seen as equal partners in the process” in my eyes any process connected with the cared for persons life,if this single sentence was actioned it would save so much misery . I would like to see the first draft sent to Luke Clenents or Belina Schwehr and other notable practitioners in the Adult social care world for their views and input.

    • Pauline Thomas permalink

      Actually all the sound bites that are dreamed up by the social services are nonsense. Most of these people who are employed by our LA’s to facilitate the social services post education are really PR men in disguise.

      Every new cut in services has to be sexed up to fool the poor sods who are being targeted for the chop. Take away a thriving day centre and locate to a disused shop and call it ‘ a hub’. Sounds good. If only. Make the carers feel important by calling them ‘experts by experience’. Job done. Fooled them again.

      What person knowingly goes into work to deliberately pull the wool over the eyes of the most hard pressed families in our society?

  3. Weary Mother permalink

    I have commented that as panel member/chair of mental health reviews, I far too regularly saw the presence of parents of person on section being barely tolerated. Yet the patient would be released from hospital back into their care. These parents cared 24/7 for adult sons and daughters when they were chronically ill and they had had to plead to receive any help when son/daughter acutely ill. Too often, without my intervention decision to discharge would have been made by the panel with parents views and experience unheard.

    We are a long way off being seen as equals. For we are less than the newest baby health or social worker.

  4. Sally permalink

    They use an model of intellectually disabled/autistic etc children magically becoming independent adults.Its a convenient fantasy. The reality is just too terrible to consider. Very dependent vulnerable people who need care, supervision, activities all day and care at night-who will never be able to cope alone.Think of the expense!.
    .So we have the idea our children can plan and make quite complicated decisions, can live alone, occupy themselves.
    I can see where some of it is coming from. In the 60s/70s/80s and before, disabled people were lumped together. People who had no intellectual problems at all were still classed as unable to mix with the general population or make their own choices. The problem is its now swung from all disability is intellectual to all intellectual disability vainshes at adulthood.
    How can it be justified? One day in the companty of an adult with moderate/severe intellectual disability would disabuse you of the idea he/she can just timetable their day , set up a meeting with one of their many friends, settle down with a good book.

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